1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.
  1. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    Hi Guys

    I make no judgement on the reality or otherwise of this bug - I realise its controversial, and I don't have a microscope. But people keep asking me about it, and a friend sent me this, so I thought I would upload the document. I don't know the doctor, or the efficacy of the treatment regime - I am posting for information, not as a personal recommendation.

    Attached Files:

  2. marple

    marple

    Messages:
    26
    Likes:
    5
    UK
    Thanks Sianrecovery for this attachment, very interesting and useful. I understand the author is very highly regarded in the US.
  3. marple

    marple

    Messages:
    26
    Likes:
    5
    UK
    Sian
    I have sent you a PM
  4. baccarat

    baccarat Senior Member

    Messages:
    188
    Likes:
    80
    Excellent, thanks for posting.
    I had always thought that biofilm was one of the latest fad but I changed my mind of late.cIt's interesting that biofilm is mostly associated with bacteria but it seems parasites are involved. I am not sure I have this bug but parasites were an issue for me which I only discovered by treating the problem (can't afford these sophisticated tests). Some of the treatments proposed in fact worked so well for me.
    sianrecovery likes this.
  5. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    Parasites are my go-to condition of the moment Baccarat - what worked?
  6. jen1177

    jen1177

    Messages:
    62
    Likes:
    22
    Arizona
    Interesting paper. Thanks for posting this, Sian.
    Dr. Corson takes a different approach to treatment as far as the drugs are concerned. I am being treated by Dr. Fry for protomyxzoa with doxycycline and I'm going to start plaquenil this week. I've been on the doxy for about 5 months and so far there is no improvement. I am curious to hear from others who are being treated for protomyxzoa and how they are doing with the treatment.
    frenchmoxie and sianrecovery like this.
  7. baccarat

    baccarat Senior Member

    Messages:
    188
    Likes:
    80
    I did the klinghardt protcol consisting of praziquantel-ivermectin,albendazole and alinia. Ivermectin was particularly helpful. But some other remedies did not work. Artemisinin was useless, coptis is good for intestinal bacteria and in combination with cryptolepsis probably kills any bug in your gut. This is my #1 combo for food poisoning or when I seem to pick up any critters.
    This site has some good info http://www.parasitetesting.com/index.cfm
    I like this document in particular which tells you if any herb has any chance at all against a specific parasite http://www.parasitetesting.com/_private/Herbal remedies for Parasitic Infections.pdf
    sianrecovery likes this.
  8. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    That's brilliant Baccarat - thank you so much. The Klinghart protocol sounds pretty comprehensive - I will have a look at it, and the other sources. Have just sourced the drugs for the CDU triple cocktail, and was going to give that a go - when I could summon up the desire to feel like completely wasted for ten days.
    Jen1177 - do you also look on the Arizona Lyme forum? there's a few Fry patients there - some I've meet, and seem to have made real gains, others not. For what its worth, I have always seen some improvement when I start a new abx if it has anti-protozoan qualities - flagyl, clindamycin, and then doxy - but didn't really improve until I threw thyroid hormones into the mix. I haven't stuck to low fat - have you?
  9. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    by the way - a good few people on the parasite forum which comes up if you google pptu parasites seem to regard the guy you reference above Dr Amin - as kind of a charlatan, but I say that only as a caution, I know nothing of him himself.
  10. jen1177

    jen1177

    Messages:
    62
    Likes:
    22
    Arizona
    Sian,
    Hmmm, I'll have to check out the AZ Lyme forum. I hadn't heard of it. Thanks.
    I haven't really stuck to the low fat diet either. I had been a vegetarian for over 20 years but then was diagnosed with food allergies to all the vegetarian protein sources (dairy, eggs, soy, beans) and was basically forced to go back to eating meat for protein so it's not really possible for me to do the low low fat diet that I'm supposed to be on. I do eat as little fat as I can while still enjoying my meals. :) I have stopped all magnesium and calcium supplements. I don't know if I'm actually getting better on not and that worries me. There doesn't seem to be a way to guage our progress because there is no bloodtest to quantify the degree of infection with protomyxzoa.

    Do you feel like your treatment is working and you are getting better? Or is it still too soon to tell?
    Jen
  11. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    [I was found to have bacteria and parasites in my small intestine. Rich Vank suggested Paradex and Candibactin. I did them for six weeks stopped for 6 and did it again. The next test was clean.
    sianrecovery likes this.
  12. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    thanks Marg - that is really good to know. God bless Rich, what a loss he is to all of us.

    Jen - I think you really have to rely on your own instincts. A friend of mine who started at the same time stopped, because she was getting no better. I did better when I put thyroid hormones in. Fry seems proto as the uber bug, on which everything else follows, but without proof, we can only use our intelligence. There are many bugs, and issues of methylation, endocrine system, metabolism etc all count. What did Pasteur say on his deathbed? Something along the lines of the microbe being nothing, the terrain everything? I think a balanced approach to boosting the host while weakening the pathogen is probably best.
    As for fat, neither of us can really know if he's right can we? Because we haven't stuck to his key tenet. I'm glad to be off megadoses of magnesium tho, one thing that whole episode taught me what don't believe everything you are told - more of any one substance is probably not better if your system is already unbalanced in its abilities to use them appropriately.
  13. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    there is also a specific forum for people with the proto diagnosis, I forget its details, and haven't spent much time on there, but will find and post.
  14. Creekee

    Creekee Senior Member

    Messages:
    143
    Likes:
    111
    Arizona
    sianrecovery likes this.
  15. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    thanks creekee, that's really helpful
  16. jen1177

    jen1177

    Messages:
    62
    Likes:
    22
    Arizona
    Thanks, Sian and Creekee,
    I actually joined the Protomyxzoa.org a couple of days ago. Yep , I know very well not to believe everything I'm told by doctors. Boy howdy! :lol: That's why I'm trying to figure out if I even have protomyxzoa at all since I was negative on the PCR test.
    I liked that paraphrased quote from Pasteur. I would agree.

    I did try taking 1/2 tab of plaquenil yesterday and it did make me flare (flu-like symptoms) so maybe I do have a protozoa infection even if it's not myxie (protomyxzoa). Dr. F predicted I'd flare pretty bad on the plaquenil. I did live in South America for 2 years. Who knows what I could have caught. What a world, what a world. :)
    BUT, about 6 years ago I had tried taking plaquenil for the CFS (a rhuematologist Rx) and I don't remember it doing anything at all so I stopped taking it. I really don't remember what happened. I am a lot sicker than I was 6 years ago, so I'm not sure what to think about the plaquenil now. So confusing.:confused:
    Jennifer
    sianrecovery likes this.
  17. jen1177

    jen1177

    Messages:
    62
    Likes:
    22
    Arizona
    I now have an explanation for why I was negative by PCR for protomyxzoa but positive for "substantial" presence of biofilm communities in my blood sample under a microscope. I didn't actually have protomyxzoa rheumatica, but rather some other similar malaria-like protozoa that lives in biofilm communities in the blood. Dr. Fry told me today that I'm neg. for PR but he's working on developing specific tests for 4 other protozoas (currently unnamed) and I can get retested in a few months and I'll most likely test positive for one or more of them by PCR. So, for the last 7 months or so I believed I was positive for PR when I really wasn't. He just never explained it until today. Not sure why...

    So, I will get tested when the tests are developed and find out what the heck I really have. Oy! :confused:
    sianrecovery likes this.
  18. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    I saw that there were more on the Arizona Lyme group. It's difficult, isn't it - Fry thinks his bugs are the metainfection, I have no idea. I do know that after a few months off, I restarted abx - tindamax, for the first time - and I feel miles better after four days. There's something going on, but its bloody difficult to say what. yeah - :( or should that be:ill:?!
    merylg likes this.
  19. Creekee

    Creekee Senior Member

    Messages:
    143
    Likes:
    111
    Arizona
    Arrrgh...one half of one Plaquenil and immediate rash on left hip. o_O
    sianrecovery likes this.
  20. sianrecovery

    sianrecovery Senior Member

    Messages:
    695
    Likes:
    399
    Manchester UK
    not liking the sound of that Creekee....when I had my reaction to it, Fry's office suggested restarting at half a tab three times a week...I didn't, but it's so hard to know if that's a sign your body really doesn't like it, or if its herx - what's your instinct? xxxx

See more popular forum discussions.

Share This Page